SEER PROGRAM CODING AND STAGING MANUAL 2013

Transcription

1 SEER PROGRAM CODING AND STAGING MANUAL 2013 SURVEILLANCE SYSTEMS BRANCH SURVEILLANCE RESEARCH PROGRAM DIVISION OF CANCER CONTROL AND POPULATION SCIENCES NATIONAL INSTITUTES OF HEALTH PUBLIC HEALTH SERVICE US DEPARTMENT OF HEALTH AND HUMAN SERVICES Effective Date: Cases diagnosed January 1, 2013 NIH Publication Number U.S. Department of Health and Human Services National Institutes of Health National Cancer Institute

2 SEER PROGRAM CODING AND STAGING MANUAL 2013 EDITORS: MARGARET BELL ADAMO, BS, RHIT, CTR, NCI SEER; CAROL HAHN JOHNSON, BS, CTR, NCI SEER; JENNIFER L. RUHL, BBA, RHIT, CCS, CTR, NCI SEER; LOIS A. DICKIE, CTR, NCI SEER. Suggested Citation: Adamo MB, Johnson CH, Ruhl JL, Dickie, LA, (eds.) SEER Program Coding and Staging Manual. National Cancer Institute, NIH Publication number , Bethesda, MD Acknowledgements Zaria Tatalovich, PhD Leon Sun, MD, PhD, CTR NCI SEER NCI SEER Copyright Information: All material in this manual is in the public domain and may be reproduced or copied without permission. We do request that you use a source citation.

3 TABLE OF CONTENTS Preface to the 2013 SEER Program Coding and Staging Manual... vii Introduction SEER Program... 1 SEER Coding and Staging Manual Contents... 1 REPORTABILITY... 1 Dates of Diagnosis/Residency... 1 Reportable Diagnoses... 1 Diagnosis Prior to Birth... 3 Instructions for Solid Tumors... 4 Cases Diagnosed Clinically are Reportable... 4 Ambiguous Terminology... 5 How to Use Ambiguous Terminology for Case Ascertainment... 5 Determining Multiple Primaries: Solid Tumors... 9 Determining Multiple Primaries: Hematopoietic and Lymphoid Neoplasms... 9 SECTION I BASIC RECORD IDENTIFICATION SEER Participant Patient ID Number Record Type SEER Record Number SEER Coding System -- Original SEER Coding System -- Current SECTION II INFORMATION SOURCE Type of Reporting Source SECTION III DEMOGRAPHIC INFORMATION Place of Residence at Diagnosis County Census Tract Census Tract Certainty Census Tract Census Tract Certainty Birthplace-State Birthplace-Country Date of Birth Table of Contents iii

4 Date of Birth Flag Age at Diagnosis RACE 1, 2, 3, 4, Race-NAPIIA IHS Link Spanish Surname or Origin Computed Ethnicity Computed Ethnicity Source NHIA Derived Hispanic Origin Sex Marital Status at Diagnosis Primary Payer at Diagnosis SECTION IV DESCRIPTION OF THIS NEOPLASM Date of Diagnosis Date of Diagnosis Flag Sequence Number-Central Primary Site Laterality Diagnostic Confirmation Morphology Histologic Type ICD-O Behavior Code Grade, Differentiation or Cell Indicator Multiplicity Counter Date of Multiple Tumors Date of Multiple Tumors Flag Type of Multiple Tumors Reported as One Primary Ambiguous Terminology Date of Conclusive Terminology Date of Conclusive Diagnosis Flag ICD-O-2 Conversion Flag ICD-O-3 Conversion Flag SEER Summary Stage SEER Summary Stage Table of Contents iv

5 SECTION V COLLABORATIVE STAGE DATA COLLECTION SYSTEM SECTION VI FIRST COURSE OF THERAPY Date Therapy Initiated Date Therapy Initiated Flag Treatment Status Surgery of Primary Site Scope of Regional Lymph Node Surgery Surgical Procedure of Other Site Reason for No Surgery of Primary Site Radiation Radiation Sequence with Surgery Chemotherapy Hormone Therapy Immunotherapy Hematologic Transplant and Endocrine Procedures Systemic Treatment/Surgery Sequence Other Therapy SECTION VII FOLLOW UP INFORMATION Date of Last Follow Up or of Death Date of Last Follow Up or Death Flag Vital Status ICD Code Revision Used for Cause of Death Underlying Cause of Death Type of Follow Up SECTION VIII ADMINISTRATIVE CODES Site/Type Interfield Review Histology/Behavior Interfield Review Age/Site/Histology Interfield Review Sequence Number/Diagnostic Confirmation Interfield Review Site/Histology/Laterality/Sequence Interrecord Review Surgery/Diagnostic Confirmation Interfield Review Type of Reporting Source/Sequence Number Interfield Review Sequence Number/Ill-Defined Site Interfield Review Leukemia or Lymphoma/Diagnostic Confirmation Interfield Review Table of Contents v

6 Over-ride Flag for Site/Behavior (IF39) Over-ride Flag for Site/EOD/Diagnosis Date (IF40) Over-ride Flag for Site/Laterality/EOD (IF41) Over-ride Flag for Site/Laterality/Morphology (IF42) Table of Contents vi

7 PREFACE TO THE 2013 SEER PROGRAM CODING AND STAGING MANUAL The 2013 Surveillance, Epidemiology and End Results (SEER) Program Coding and Staging Manual is effective for cases diagnosed January 1, 2013, and forward. Previous editions of this manual are available on the SEER website. The 2013 SEER Program Coding and Staging Manual includes all errata and revisions that apply to cases diagnosed January 1, 2013 and forward. The 2013 changes and additions include New data items Birthplace State Birthplace Country Data items removed Place of Birth Code(s) added to SEER Coding System - Current SEER Coding System - Original Changes in codes, and changes in code definitions were approved by the Uniform Data Standards Committee of the North American Association of Central Cancer Registries. This manual includes data item descriptions, codes, and coding instructions for cases diagnosed January 1, 2013 and forward. Data items that are not required for 2013 diagnoses but were collected in years prior to 2013 must be transmitted to SEER as blanks for cases diagnosed in 2013 and subsequent years. Descriptions of historic data items, allowable codes, and coding rules can be found in historic coding manuals. Technical questions, suggestions, and revisions may be submitted using Ask A SEER Registrar on the SEER website: SEER regions may also submit technical questions to NCI SEER using the web-based SINQ system at Relevant questions and answers from Ask A SEER Registrar and from the SINQ system will be incorporated into the next edition of the SEER manual. This manual may be downloaded in electronic format from the SEER website Collection and Storage of Date Fields Dates may be collected and stored in any format, including the traditional format, (month, day, year [MMDDYYYY]), or the new date format, (year, month, day [YYYYMMDD]). The new format must be used for transmission (see below). See the 2010 NAACCR Implementation Guidelines and Recommendations for converting dates collected and stored in the traditional format to the new format and vice versa, and for deriving the date flags from information collected in the traditional format. Transmission Instructions for Date Fields As of January 1, 2010, date fields must be transmitted in the year, month, day format (YYYYMMDD). The new transmission requirements are intended to improve the interoperability, or communication, of cancer registry data with other electronic record systems. Date fields are fixed-length and left-justified. Replace any missing component with spaces. If there are no known date components, the date field will be completely blank. For example: YYYYMMDD when complete date is known and valid Preface vii

8 YYYYMM when year and month are known and valid, and day is unknown YYYY when year is known and valid, and month and day are unknown Blank when no known date applies Date flags associated with each date field were added as new data items in The date flags are used when all eight places of a date field are blank. The flags explain why the field is blank. Date flags replace nondate information that had previously been transmitted in date fields. Coding to indicate unknown is an example of nondate information that was previously transmitted in date fields. Note: Date of Diagnosis cannot be entirely blank. See the specific coding instructions for each date field. Most SEER registries collect the month, day, and year. When the full date (YYYYMMDD) is transmitted, the seventh and eighth digits (day) will be deleted when the data are received by NCI SEER. The corresponding date flag is not affected (it will remain blank). SEER Site-Specific Factors 1-6 Six data items have been set aside as place holders. These data items are not in use and must be left blank. NAACCR Item # Item Name Codes 3700 SEER Site-Specific Fact 1 Blank 3702 SEER Site-Specific Fact 2 Blank 3704 SEER Site-Specific Fact 3 Blank 3706 SEER Site-Specific Fact 4 Blank 3708 SEER Site-Specific Fact 5 Blank 3710 SEER Site-Specific Fact 6 Blank Preface viii

9 INTRODUCTION SEER PROGRAM Two programs, the End Results Group and the Third National Cancer Survey, were predecessors of the Surveillance, Epidemiology, and End Results (SEER) Program. SEER publishes the 2013 SEER Program Coding and Staging Manual to provide instructions and descriptions that are detailed enough to promote consistent abstracting and coding. SEER CODING AND STAGING MANUAL CONTENTS For all cases diagnosed on or after January 1, 2013, the instructions and codes in this manual take precedence over all previous instructions and codes. The 2013 SEER Program Coding and Staging Manual explains the format and the definitions of the data items required by SEER. Documentation and codes for historical data items can be found in earlier versions of the SEER Program Code Manual. Earlier versions are available on CD and on the SEER website. This coding manual does not prevent SEER contract registries or other registries that follow SEER rules from collecting additional data items useful for those regions. DATES OF DIAGNOSIS/RESIDENCY REPORTABILITY SEER registries are required to collect data on persons who are diagnosed with cancer and who, at the time of diagnosis, are residents of the geographic area covered by the SEER registry. Cases diagnosed on or after January 1, 1973 are reportable to SEER. Registries that joined the SEER Program after 1973 have different reporting start dates specified in their contracts. REPORTABLE DIAGNOSES 1. In Situ and Malignant/Invasive Histologies a. All histologies with a behavior code of /2 or /3 in the International Classification of Diseases for Oncology, Third Edition (ICD-O-3). Note 1: AIN III of the anus or anal canal (C210-C211), VAIN III, and VIN III are reportable. Note 2: Urine cytology positive for malignancy is reportable Code the primary site to C689 in the absence of any other information Exception: When a subsequent biopsy of a urinary site is negative, do not report the case For 2013 diagnoses and forward, report these cases when they are encountered. Do not implement new/additional casefinding methods to capture these cases. As always, do not report cytology cases with ambiguous terminology b. Exceptions: In situ and malignant/invasive histologies not required by SEER i. Skin primary (C440-C449) with any of the following histologies Malignant neoplasm ( ) Epithelial carcinoma ( ) Papillary and squamous cell carcinoma ( ) AIN III (8077) arising in perianal skin (C445) Introduction and General Instructions 1

10 Basal cell carcinoma ( ) Note: If the registry collects basal or squamous cell carcinoma of skin sites C440-C449, sequence them in the range and do not report them to SEER ii. Carcinoma in situ of cervix (/2) or cervical intraepithelial neoplasia (CIN III) of the cervix (C530-C539) Note: Collection stopped effective with cases diagnosed 1/1/1996 and later except as required in individual contracts iii. Prostatic intraepithelial neoplasia (PIN III) of the prostate (C619) Note: Collection stopped effective with cases diagnosed 1/1/2001 and later 2. Benign/Non-Malignant Histologies a. Pilocytic/Juvenile astrocytomas are reportable; code the histology and behavior as 9421/3 b. Benign and borderline primary intracranial and CNS tumors with a behavior code of /0 or /1 in ICD-O-3 are collected for the following sites, effective with cases diagnosed 1/1/2004 and later. See the table below for required sites. Required Sites for Benign and Borderline Primary Intracranial and Central Nervous System Tumors General Term Specific Sites ICD-O-3 TopographyCode Meninges Cerebral meninges C700 Spinal meninges C701 Meninges, NOS C709 Brain Cerebrum C710 Frontal lobe C711 Temporal lobe C712 Parietal lobe C713 Occipital lobe C714 Ventricle, NOS C715 Cerebellum, NOS C716 Brain stem C717 Overlapping lesion of brain C718 Brain, NOS C719 Spinal cord, cranial nerves, and other parts of the Spinal cord C720 central nervous system Cauda equina C721 Olfactory nerve C722 Optic nerve C723 Acoustic nerve C724 Cranial nerve, NOS C725 Overlapping lesion of brain C728 and central nervous system Nervous system, NOS C729 Pituitary, craniopharyngeal duct and pineal gland Pituitary gland C751 Craniopharyngeal duct C752 Pineal gland C753 Note: Benign and borderline tumors of the cranial bones (C410) are not reportable. Introduction and General Instructions 2

11 DIAGNOSIS PRIOR TO BIRTH SEER Program Coding and Staging Manual 2013 SEER reportability requirements apply to diagnoses made in utero. Diagnoses made in utero are reportable only when the pregnancy results in a live birth. In the absence of documentation of stillbirth, abortion or fetal death, assume there was a live birth and report the case. Disease Regression When a reportable diagnosis is confirmed prior to birth and disease is not evident at birth due to regression, accession the case based on the pre-birth diagnosis. REPORTABILITY EXAMPLES Reportable Example 1: Path report says Atypical fibroxanthoma (superficial malignant fibrous histiocytoma). The case is reportable because the information in parentheses provides more detail and confirms a reportable malignancy. Example 2: Positive histology from needle biopsy followed by negative resection. This case is reportable based on positive needle biopsy. Example 3: Biopsy-proven squamous cell carcinoma of the nipple with a subsequent areolar resection showing foreign body granulomatous reaction to suture material and no evidence of residual malignancy in the nipple epidermis. This case is reportable. The fact that no residual malignancy was found in the later specimen does not disprove the malignancy diagnosed by the biopsy. Example 4: Final diagnosis from dermatopathologist: ulcerated histologically malignant spindle cell neoplasm, consistent with atypical fibroxanthoma. Note: An exhaustive immunohistochemical work-up shows no melanocytic, epithelial or vascular differentiation. Atypical fibroxanthoma is a superficial form of a malignant fibrous histiocytoma." This case is reportable. The pathologist has the final say on behavior for a particular case. In this case, the pathologist states that this tumor is malignant. Example 5: Aggressive adult granulosa cell tumor with one of two lymph nodes positive for malignant metastatic granulosa cell tumor." This case is reportable because malignant granulosa cell tumor is reportable. The lymph node metastases prove malignancy. Example 6: Carcinoid of the appendix found on appendectomy. Patient returns later with metastases in regional lymph nodes. This case is reportable because of the metastatic lymph nodes -- this a malignant carcinoid. Code the diagnosis date to the date of the appendectomy and the first course of treatment date to the appendectomy date. Example 7: Ovarian mucinous borderline tumor with foci of intraepithelial carcinoma. This case is reportable because there are foci of intraepithelial carcinoma (carcinoma in situ). Example 8: "Squamous cell carcinoma of the anus, NOS." Squamous cell carcinoma of the anus (C210) is reportable. Squamous cell carcinoma of the perianal skin (C445) is not reportable. Example 9: GIST with lymph nodes positive for malignancy. Report the case and code the behavior as malignant (/3). Introduction and General Instructions 3

12 Not Reportable Example 1: Left thyroid lobectomy shows microfollicular neoplasm with evidence of minimal invasion. Micro portion of path report states "The capsular contour is focally distorted by a finger of the microfollicular nodule which appears to penetrate into the adjacent capsular and thyroid tissue." Do not report this case based on the information provided. There is no definitive statement of malignancy. Search for additional information in the record. Contact the pathologist or the treating physician. Example 2: Sclerosing hemangioma of the lung with multiple regional lymph nodes involved with sclerosing hemangioma. This case is not reportable. The lymph node involvement is non-malignant. According to the WHO Classification of Lung Tumours, sclerosing hemangioma "behaves in a clinically benign fashion...reported cases with hilar or mediastinal lymph node involvement do not have a worse prognosis." Example 3: Carcinoid, NOS of the appendix that extends into mesoappendiceal adipose tissue. This case is not reportable. Extension does not make a carcinoid, NOS of the appendix reportable. Benign and borderline tumors can and do extend into surrounding tissue. Example 4: Carcinoid tumorlets are not reportable. Example 5: VIN II-III and VIN II/III are not reportable. Example 6: Squamous cell carcinoma of the perianal skin (C445) is not reportable. Squamous cell carcinoma of the anus (C210) is reportable. INSTRUCTIONS FOR SOLID TUMORS Note: For hematopoietic and lymphoid neoplasms, see the Reportability Instructions in the 2012 Hematopoietic Manual and the Hematopoietic Database. CASES DIAGNOSED CLINICALLY ARE REPORTABLE In the absence of a histologic or cytologic confirmation of a reportable cancer, accession a case based on the clinical diagnosis (when a recognized medical practitioner says the patient has a cancer or carcinoma). A clinical diagnosis may be recorded in the final diagnosis on the face sheet or other parts of the medical record. Note: A pathology report normally takes precedence over a clinical diagnosis. If the patient has a negative biopsy, the case would not be reported. Exceptions 1. Patient receives treatment for cancer. Accession the case. 2. It has been six months or longer since the negative biopsy, and the physician continues to call this a reportable disease. Accession the case. Brain or CNS Neoplasms A brain or a CNS 'neoplasm' identified only by diagnostic imaging is reportable. Introduction and General Instructions 4

13 AMBIGUOUS TERMINOLOGY SEER Program Coding and Staging Manual 2013 Ambiguous terminology may originate in any source document, such as a pathology report, radiology report, or clinical report. The terms listed below are reportable when they are used with a term such as cancer, carcinoma, sarcoma, etc. Ambiguous terms that are reportable (used to determine reportability) Apparent(ly) Appears Comparable with Compatible with Consistent with Favor(s) Malignant appearing Most likely Presumed Probable Suspect(ed) Suspicious (for) Typical (of) Do not substitute synonyms such as supposed for presumed or equal for comparable. Do not substitute likely for most likely. HOW TO USE AMBIGUOUS TERMINOLOGY FOR CASE ASCERTAINMENT 1. In Situ and Invasive (Behavior codes /2 and /3) a. If any of the reportable ambiguous terms precede a word that is synonymous with an in situ or invasive tumor (e.g.: cancer, carcinoma, malignant neoplasm, etc.), accession the case. Example: The pathology report says: Prostate biopsy with markedly abnormal cells that are typical of adenocarcinoma. Accession the case. Negative Example: The final diagnosis on the outpatient report reads: Rule out pancreatic cancer. Do not accession the case. b. Discrepancies i. Accession the case based on the reportable ambiguous term when there are reportable and non-reportable ambiguous terms in the medical record. 1. Do not accession a case when the original source document used a nonreportable ambiguous term and subsequent documents refer to history of cancer. Example: Report from the dermatologist is possible melanoma. Patient admitted later for unrelated procedure and physician listed history of melanoma. Give priority to the information from the dermatologist and do not report this case. Possible is not a reportable ambiguous term. The later information is less reliable in this case. ii. Accept the reportable term and accession the case when there is a single report in which both reportable and non-reportable terms are used. Introduction and General Instructions 5

14 Example: Abdominal CT reveals a 1 cm liver lesion. The lesion is consistent with hepatocellular carcinoma appears in the discussion section of the report. The final diagnosis is 1 cm liver lesion, possibly hepatocellular carcinoma. Accession the case. "Consistent with" is a reportable ambiguous term. Accept "consistent with" over the non-reportable term "possibly." Exception: Do not accession a case based ONLY on suspicious cytology. Note: Suspicious cytology means any cytology report diagnosis that uses an ambiguous term, including ambiguous terms that are listed as reportable on the preceding page. c. Use these terms when screening diagnoses on pathology reports, operative reports, scans, mammograms, and other diagnostic testing other than tumor markers. i. Do not accession a case when resection, excision, biopsy, cytology, or physician s statement proves the ambiguous diagnosis is not reportable. Example 1: Mammogram shows calcifications suspicious for intraductal carcinoma. The biopsy of the area surrounding the calcifications is negative for malignancy. Do not accession the case. Example 2: CT report states "mass in the right kidney, highly suspicious for renal cell carcinoma." CT-guided needle biopsy with final diagnosis "Neoplasm suggestive of oncocytoma. A malignant neoplasm cannot be excluded." Discharged back to the nursing home and no other information is available. Do not accession the case. The suspicious CT finding was biopsied and not proven to be malignant. "Suggestive of" is not a reportable ambiguous term. Example 3: Stereotactic biopsy of the left breast is "focally suspicious for DCIS" and is followed by a negative needle localization excisional biopsy. Do not accession the case. The needle localization excisional biopsy was performed to further evaluate the suspicious stereotactic biopsy finding. The suspicious diagnosis was proven to be false. Example 4: Esophageal biopsy with diagnosis of "focal areas suspicious for adenocarcinoma in situ change." Diagnosis on partial esophagectomy specimen with foci of high grade dysplasia; no invasive carcinoma identified." Do not accession the case. The esophagectomy proved that the suspicious biopsy result was false. 2. Benign and borderline primary intracranial and CNS tumors a. Use the above Ambiguous terms that are reportable list to identify benign and borderline primary intracranial and CNS tumors that are reportable. b. If any of the reportable ambiguous terms precede either the word tumor or the word neoplasm, accession the case. Example: The mass on the CT scan is consistent with pituitary tumor. Accession the case. c. Discrepancies i. Accession the case based on the reportable ambiguous term when there are reportable and non-reportable ambiguous terms in the medical record. Introduction and General Instructions 6

15 1. Do not accession a case when subsequent documents refer to history of tumor and the original source document used a non-reportable ambiguous term. ii. Accept the reportable term and accession the case when there is a single report and one section of a report uses a reportable term such as apparently and another section of the same report uses a term that is not on the reportable list. Exception: Do not accession a case based ONLY on ambiguous cytology (the reportable term is preceded by an ambiguous term such as apparently, appears, compatible with, etc.). d. Use these terms when screening diagnoses on pathology reports, scans, ultrasounds, and other diagnostic testing other than tumor markers. i. Do not accession the case when resection, excision, biopsy, cytology or physician s statement proves the ambiguous diagnosis is not reportable. INSTRUCTIONS FOR HEMATOPOEITIC AND LYMPHOID NEOPLASMS See the Reportability Instructions in the 2012 Hematopoietic Manual and Database. CHANGING INFORMATION ON THE ABSTRACT The information originally collected on the abstract should be changed or modified under the following circumstances. 1. To correct coding or abstracting errors (for example, errors found during quality control activities). 2. When clarifications or rule changes retroactively affect data item codes. Example: SEER adds codes to a data item and asks the registries to review a set of cases and update using the new codes. 3. When better information is available later. Example 1: Consults from specialty labs, pathology report addendums or comments or other information have been added to the chart. Reports done during the diagnostic workup and placed on the chart after the registrar abstracted the information may contain valuable information. Whenever these later reports give better information about the histology, grade of tumor, primary site, etc., change the codes to reflect the better information. Example 2: The primary site was recorded as unknown at the time of diagnosis. At a later date, the physician determines that the cancer is primary to the testis. Change the primary site from unknown to testis. Example 3: The original diagnosis was in situ. Metastases are diagnosed at a later date. Change the behavior code for the original diagnosis from in situ to invasive when no new primary has been diagnosed in the interim. Example 4: Patient seen in Hospital A. The pathologic diagnosis was negative for malignancy. Patient goes to Hospital B and the slides from Hospital A are re-read. The diagnosis at Hospital B Introduction and General Instructions 7

16 is reportable. Hospital B sends their slide report back to Hospital A. Hospital A reports the case based on the info from Hospital B. Enter supporting documentation in a text field. 4. When the date of diagnosis is confirmed in retrospect to be earlier than the original date abstracted. Example: Patient has surgery for a benign argentaffin carcinoid (8240/1) of the sigmoid colon in May In January 2012 the patient is admitted with widespread metastasis consistent with malignant argentaffin carcinoid. The registrar accessions the malignant argentaffin carcinoid as a 2012 diagnosis. Two months later, the pathologist reviews the slides from the May 2011 surgery and concludes that the carcinoid diagnosed in 2011was malignant. Change the date of diagnosis to May 2011and histology to 8241 and the behavior code to malignant (/3). Introduction and General Instructions 8

17 DETERMINING MULTIPLE PRIMARIES: SOLID TUMORS Apply the general instructions and instructions for determining multiple primaries in the Multiple Primary and Histology Coding Rules Manual. Apply the site-specific multiple primary rules in the Multiple Primary and Histology Coding Rules Manual. Site-specific multiple primary rules cover the following Head and neck C000-C148, C300-C329 Colon C180-C189 Lung C340-C349 Melanoma of the skin C440-C449 with Histology Breast C500-C509 Kidney C649 Ureter/Renal pelvis/bladder C659, C669, C670-C679, C680-C689 Benign brain C700, C701, C709, C710-C719, C720-C725, C728, C729, C751- C753 Malignant brain C700, C701, C709, C710-C719, C720-C725, C728, C729, C751- C753 Other sites Excludes Head and Neck, Colon, Lung, Melanoma of Skin, Breast, Kidney, Renal Pelvis, Ureter, Bladder, Brain Site-specific rules do not cover lymphoma and leukemia ( ). DETERMINING MULTIPLE PRIMARIES: HEMATOPOIETIC AND LYMPHOID NEOPLASMS Apply the Multiple Primary Rules in the 2012 Hematopoietic Manual. Introduction and General Instructions 9

18 SECTION I BASIC RECORD IDENTIFICATION The Basic Record Identification fields provide a unique identifier for individual records or a set of records for each person and tumor in the SEER data system. The coded identifiers protect data confidentiality. Note: For San Francisco, Los Angeles, San Jose/Monterey and Greater California the patient identifier identifies a unique patient across the entire state. The combination of the SEER Participant Number, Patient ID Number, and Record Number identifies a unique patient record or tumor. Basic Record Identification 10

19 SEER PARTICIPANT Item Length: 10 NAACCR Item #: 40 NAACCR Name: Registry ID A unique code assigned to each SEER participating registry. The number identifies the registry sending the record and what population the data are based upon. Code Participant Area Covered Year SEER Reporting Started Cancer Prevention Institute of California Connecticut Department of Public Health Karmanos Cancer Institute/Wayne State University Research Corporation of Hawaii Name 5 counties 1973 San Francisco Oakland SMSA Entire state 1973 Connecticut 3 counties 1973 Metropolitan Detroit Entire state 1973 Hawaii University of Iowa Entire state 1973 Iowa University of New Entire state 1973 New Mexico Mexico Fred Hutchinson Cancer Research Center 13 counties 1974 Seattle-Puget Sound University of Utah Entire state 1973 Utah Emory University 5 counties 1975 Metropolitan Atlanta Alaska Native Native American 1984 Alaska Native population of Alaska Cancer Prevention Institute of California 4 counties 1992 San Jose-Monterey University of New Mexico University of Southern California Native American 1973 Arizona Indians population of Arizona 1 county 1992 Los Angeles Emory University 10 Counties 1978 Rural Georgia Public Health Institute, California 2000 Greater California University of Kentucky Research Foundation Louisiana State University HSC California except Los Angeles, San Francisco-Oakland, and San- Jose/Monterey Entire state 2000 Kentucky Entire state 2000 Louisiana Basic Record Identification 11

20 Code Participant Area Covered Year SEER Name Reporting Started New Jersey Entire state 2000 New Jersey Department of Health and Senior Services Emory University Entire state other than 2010 Greater Georgia metropolitan Atlanta and rural Georgia Cherokee Nation Oklahoma Native American population 1997 Cherokee Nation Basic Record Identification 12

21 PATIENT ID NUMBER Item Length: 8 NAACCR Item #: 20 NAACCR Name: Patient ID Number The participating SEER registry generates a unique number and assigns that number to one patient. The SEER registry will assign this same number to all of the patient s subsequent tumors (records). Enter preceding zeros if the number is less than 8 digits. Example: Patient # 7034 would be entered as Note: For the state of California, the patient ID number is assigned for the entire state, not for the individual registries within the state. Basic Record Identification 13

22 RECORD TYPE Item Length: 1 NAACCR Item #: 10 NAACCR Name: RECORD TYPE This is a computer-generated field that identifies the type of record that is being transmitted. A file should have records of only one type. Code I C A U M L Description Incidence-only record type (nonconfidential coded data) Length = 3339 Confidential record type (incidence record plus confidential data) Length = 5564 Full case Abstract record type (incidence and confidential data plus text summaries; used for reporting to central registries) Length = Correction/Update record type (short format record used to submit corrections to data already submitted) Length = 883 Record Modified since previous submission to central registry (identical in format to the A record type) Length = Pathology Laboratory Basic Record Identification 14

23 SEER RECORD NUMBER Item Length: 2 NAACCR Item #: 2190 NAACCR Name: SEER Record Number The Record Number is a unique sequential number. The highest number for each patient identifies the number of records that have been submitted to SEER for that particular patient. This data item is helpful in record linkage. The record number is generated by the computer system for each SEER submission. The record numbers are sequential, starting with the number 01. The highest number assigned represents the total number of records submitted to SEER for that particular patient. Code Description 01 One or first of more than one record for person 02 Second record for the person.... nn Last of nn records for person Basic Record Identification 15

24 SEER CODING SYSTEM -- ORIGINAL Item Length: 1 NAACCR Item #: 2130 NAACCR Name: SEER Coding Sys--Original SEER Coding System -- Original records the SEER coding system best describing the way the majority of SEER items in the record were originally coded. This is a computer-generated field. Code Description 0 No SEER coding 1 Pre-1988 SEER Coding Manuals SEER Coding Manual SEER Coding Manual SEER Coding Manual SEER Coding Manual SEER Coding Manual SEER Coding Manual SEER Coding Manual SEER Coding Manual with 2008 changes A 2010 SEER Coding Manual B 2011 SEER Coding Manual C 2012 SEER Coding Manual D 2013 SEER Coding Manual Basic Record Identification 16

25 SEER CODING SYSTEM -- CURRENT Item Length: 1 NAACCR Item #: 2120 NAACCR Name: SEER Coding Sys--Current SEER Coding System -- Current records the SEER coding system best describing the majority of SEER items as they are in the record (after conversion). This is a computer-generated field. Code Description 0 No SEER coding 1 Pre-1988 SEER Coding Manuals SEER Coding Manual SEER Coding Manual SEER Coding Manual SEER Coding Manual SEER Coding Manual SEER Coding Manual SEER Coding Manual SEER Coding Manual with 2008 changes A 2010 SEER Coding Manual B 2011 SEER Coding Manual C 2012 SEER Coding Manual D 2013 SEER Coding Manual Basic Record Identification 17

26 SECTION II INFORMATION SOURCE Information Source 18

27 TYPE OF REPORTING SOURCE Item Length: 1 NAACCR Item #: 500 NAACCR Name: Type of Reporting Source The Type of Reporting Source identifies the source documents that provided the best information when abstracting the case. This is not necessarily the original document that identified the case; rather, it is the source that provided the best information. Code Description 1 Hospital inpatient; Managed health plans with comprehensive, unified medical records (new code definition effective with diagnosis on or after 1/1/2006) 2 Radiation Treatment Centers or Medical Oncology Centers (hospital affiliated or independent) (effective with diagnosis on or after 1/1/2006) 3 Laboratory Only (hospital affiliated or independent) 4 Physician s Office/Private Medical Practitioner (LMD) 5 Nursing/Convalescent Home / Hospice 6 Autopsy Only 7 Death Certificate Only 8 Other hospital outpatient units/surgery centers (effective with diagnosis on or after 1/1/2006) Definitions Comprehensive, unified medical record A hospital or managed health care system that maintains a single record for each patient. That record includes all encounters in affiliated locations. Stand-alone medical record An independent facility; a facility that is not a part of a hospital or managed care system An independent medical record containing only information from encounters with that specific facility Managed health plan Any facility where all of the diagnostic and treatment information is maintained in one unit record The abstractor is able to use the unit record when abstracting the case Examples of such facilities: HMOs or other health plan such as Kaiser, Veterans Administration, or military facilities Physician office: A physician office performs examinations and tests. Physician offices may perform limited surgical procedures. Note: The category physician s office also includes facilities called surgery centers when those facilities cannot perform surgical procedures under general anesthesia. Surgery center Surgery centers are equipped and staffed to perform surgical procedures under general anesthesia The patient usually does not stay overnight Note: If the facility cannot perform surgical procedures under general anesthesia, code as physician s office. Information Source 19

28 Code Label Source Documents Priority 1 Hospital inpatient; Managed health plans with comprehensive, Hospital inpatient Offices/facilities with a comprehensive, unified record 1 unified medical records HMO physician office or group HMO-affiliated freestanding laboratory, surgery, radiation or oncology clinic Includes outpatient services of HMOs and large multi-specialty physician group practices with 2 Radiation Treatment Centers or Medical Oncology Centers (hospital-affiliated or independent) 3 Laboratory Only (hospital-affiliated or independent) 4 Physician s Office/Private Medical Practitioner (LMD ) 5 Nursing/Convalescent Home/Hospice unified records Facilities with a stand-alone medical record Radiation treatment centers Medical oncology centers (hospital affiliated or independent) There were no source documents from code 1 Laboratory with a stand-alone medical record There were no source documents from codes 1, 2, 8, or 4 Physician s office that is NOT an HMO or large multi-specialty physician group practice There were no source documents from codes 1, 2 or 8 Nursing or convalescent home or a hospice There were no source documents from codes 1, 2, 8, 4, or 3 6 Autopsy Only Autopsy The cancer was first diagnosed on autopsy. There are no source documents from codes 1, 2, 8, 4, 3, or 5 7 Death Certificate Only Death certificate Death certificate is the only source of information; follow-back activities did not identify source documents from codes 1, 2, 8, 4, 3, 5 or 6. If another source document is subsequently identified, the Type of Reporting Source code must be changed to the appropriate code in the range of 1, 2, 8, 4, 3, 5 or 6. 8 Other hospital outpatient units/surgery centers Other hospital outpatient units/surgery centers Includes, but not limited to, outpatient surgery and nuclear medicine services. There are no source documents from codes 1 or Priority Order for Assigning Type of Reporting Source Code the source that provided the best information used to abstract the case. Example: The only patient record available for a physician office biopsy is the pathology report identified from a freestanding laboratory. Assign code 3 [Laboratory Only (hospital-affiliated or Information Source 20

29 independent)]. Reporting source should reflect the lab where this case was identified. The MD office added nothing to the case, not even a confirmation of malignancy. When multiple source documents are used to abstract a case, use the following priority order to assign a code for Type of Reporting Source: Codes: 1, 2, 8, 4, 3, 5, 6, 7.Note: Beginning with cases diagnosed 1/1/2006, the definitions for this field have been expanded. Codes 2 and 8 were added to identify outpatient sources that were previously grouped under code 1. Laboratory reports now have priority over nursing home reports. The source facilities included in the previous code 1 (hospital inpatient and outpatient) are split between codes 1, 2, and 8. SEER recommends that you do not make changes to this field for historic cases in the central cancer registry database; i.e. cases diagnosed prior to January 1, Conversion of the old codes would be problematic and would require extensive and time-consuming review of original source documents. Information Source 21

30 SECTION III DEMOGRAPHIC INFORMATION Demographic Information 22

31 PLACE OF RESIDENCE AT DIAGNOSIS SEER registries collect information on place of residence at diagnosis. Information relating to address is not transmitted to SEER. The SEER rules for determining residency at diagnosis are either identical or comparable to rules used by the US Census Bureau, to ensure comparability of definitions of cases (numerator) and the population at risk (denominator). Coding Priorities/Sources 1. Code the street address of usual residence as stated by the patient. Definition: US Census Bureau Instructions: The place where he or she lives and sleeps most of the time or the place the person says is his or her usual home. The residency rules of departments of vital statistics may differ from those of the US Census Bureau/SEER. 2. A post office box is not a reliable source to identify the residency at diagnosis. Post office box addresses do not provide accurate geographical information for analyzing cancer incidence. Use the post office box address only if no street address information is available after follow-back. 3. Use residency information from a death certificate only when the residency from other sources is coded as unknown. Review each case carefully and apply the US Census Bureau/SEER rules for determining residence. The death certificate may give the person s previous home address rather than the nursing home address as the place of residence; use the nursing home address as the place of residence. 4. Do not use legal status or citizenship to code residence. Persons with More than One Residence 1. Code the residence where the patient spends the majority of time (usual residence). 2. If the usual residence is not known or the information is not available, code the residence the patient specifies at the time of diagnosis. Examples: The above rules should be followed for snowbirds who live in the south for the winter months, sunbirds who live in the north during the summer months, and people with vacation residences that they occupy for a portion of the year. Persons with No Usual Residence Homeless people and transients are examples of persons with no usual residence. Code the patient s residence at the time of diagnosis such as the shelter or the hospital where diagnosis was confirmed. Temporary Residents of SEER Area Code the place of usual residence rather than the temporary address for: Migrant workers Educators temporarily assigned to a university in the SEER area Persons temporarily residing with family during cancer treatment Military personnel on temporary duty assignments (TDY) Boarding school students below college level (code the parent s residence) Code the residence where the student is living while attending college. Code the address of the institution for Persons in Institutions. Demographic Information 23

32 US Census Bureau definition: Persons under formally authorized, supervised care or custody are residents of the institution. Persons who are incarcerated Persons who are physically handicapped, mentally challenged, or mentally ill who are residents of homes, schools, hospitals or wards Residents of nursing, convalescent, and rest homes Long-term residents of other hospitals such as Veteran s Administration (VA) hospitals Persons in the Armed Forces and on Maritime Ships (Merchant Marine) Armed Forces For military personnel and their family members, code the address of the military installation or surrounding community as stated by the patient. Personnel Assigned to Navy, Coast Guard, and Maritime Ships The US Census Bureau has detailed rules for determining residency for personnel assigned to these ships. The rules refer to the ship s deployment, port of departure, destination, and its homeport. Refer to US Census Bureau Publications for detailed rules: Demographic Information 24

33 COUNTY Codes for county of residence for each SEER area are listed in Appendix A. Item Length: 3 NAACCR Item #: 90 NAACCR Name: County at DX Use code 999 when it is known that a person is a resident of a particular SEER region, but the exact county is not known. Demographic Information 25

34 CENSUS TRACT 2010 Item Length: 6 NAACCR Item #: 135 NAACCR Name: Census Tract 2010 Census Tract 2010 is coded by the central registry. Census Tract 2010 records the census tract of a patient s residence at the time of diagnosis. The codes are the same codes used by the US Census Bureau for the Year 2010 census. This item is coded for cases diagnosed January 1, 2006, and forward. This field allows a central registry to add year 2010 Census tracts to cases diagnosed in previous years without losing the codes in the fields Census Tract 1970/80/90 and Census Tract 2000 which are only collected historically. A census tract is a small statistical subdivision of a county that, in general, has between 2,500 and 8,000 residents. Local committees and the US Census Bureau establish census tract boundaries and try to keep the same boundaries from census to census to maintain historical comparability, though this is not always possible. When populations increase or decrease, old tracts may be subdivided, disappear, or have their boundaries changed. Because the census tracts do change, it is important to know which census tract definition is used to code them. Codes Census tract codes Special Codes Code Description Area not census tracted Area census tracted, but census tract is not available Blank Census Tract 2010 not coded Coding Instructions 1. Code the Census tract of the patient s residence at the time of diagnosis. 2. Census tract codes should be assigned based on a computer match (geocoding software). 3. Census tracts are identified by four-digit numbers ranging from 0001 to 9989 and a two-digit suffix. 4. Assign code when an area does have an assigned census tract but the census tract is not available. 5. Right justify the first four digits and zero fill to the left. Add the suffix as the fifth and sixth digits if it exists; otherwise, use 00 so all six positions are coded. Example 1: Code census tract 516 and suffix 21 to Example 2: Census tract 409 and suffix does not exist should be coded Demographic Information 26

35 CENSUS TRACT CERTAINTY 2010 Item Length: 1 NAACCR Item #: 367 NAACCR Name: Census Tr Certainty 2010 Census tract certainty is coded by the central registry. Census tract certainty records how the 2010 census tract was assigned for an individual record. Most of the time, this information is provided by a geocoding vendor service. Central registry staff should code this field manually when geocoding is not available through a vendor service. This item is coded for cases diagnosed January 1, 2006 and forward. Code Description 1 Census tract based on complete and valid street address of residence 2 Census tract based on residence ZIP Census tract based on residence ZIP Census tract based on residence ZIP code only 5 Census tract based on ZIP code of post office box 6 Census tract/bna based on residence city where city has only one census tract, or based on residence ZIP code where ZIP code has only one census tract 9 Not assigned, geocoding attempted Blank Not assigned, geocoding not attempted Coding Priority The codes are hierarchical with the numerically lower codes having priority. 1. Code 1 has priority over codes 2-6 and 9 2. Code 2 has priority over codes 3-6 and 9 3. Code 6 has priority over codes 3-5, and 9 4. Code 3 has priority over codes 4, 5, and 9 5. Code 4 has priority over codes 5 and 9 6. Code 5 has priority over code 9 Note: Codes 1-5 and 9 are usually assigned by a geocoding vendor, while code 6 is usually assigned through a special effort by the central registry. Coding Instructions Note: Avoid using the post office box mailing address to code the census tract whenever possible. 1. Assign code 1 when the census tract is assigned with certainty based on complete and valid street address 2. Assign codes 2-5when the census tract is based on residence ZIP code a. Assign code 2 when i. Street address is incomplete or invalid, but ZIP + 4 code is known OR ii. Only rural route number is available, but ZIP + 4 code is known Demographic Information 27

36 b. Assign code 3 when i. Street address is incomplete or invalid, but ZIP + 2 code is known OR ii. Only rural route number is available, but ZIP + 2 code is known c. Assign code 4 when i. Street address is incomplete or invalid, but ZIP code is known OR ii. Only rural route number is available, but ZIP code is known d. Assign code 5 when only the post office box ZIP code is known 3. Assign code 6 when a. Address is unknown or incomplete and city has only one census tract OR b. Only ZIP code of residence is known, and ZIP code has only one census tract 4. Assign code 9 when a. ZIP code is missing OR b. The complete address of the patient is unknown or cannot be determined OR c. There is insufficient information to assign a census code Demographic Information 28

37 CENSUS TRACT 2000 Item Length: 6 NAACCR Item #: 130 NAACCR Name: Census Tract 2000 Census Tract 2000 is coded by the central registry. Census Tract 2000 records the census tract of a patient s residence at the time of diagnosis. The codes are the same codes used by the US Census Bureau for the Year 2000 census. This item is coded for cases diagnosed January 1, 1996, and forward. This field allows a central registry to add year 2000 Census tracts to cases diagnosed in previous years without losing the codes in the field Census Tract 1970/80/90 which is only collected historically. A census tract is a small statistical subdivision of a county that, in general, has between 2,500 and 8,000 residents. Local committees and the US Census Bureau establish census tract boundaries and try to keep the same boundaries from census to census to maintain historical comparability, though this is not always possible. When populations increase or decrease, old tracts may be subdivided, disappear, or have their boundaries changed. Because the census tracts do change, it is important to know which census tract definition is used to code them. Codes Census tract codes Special Codes Code Description Area not census tracted Area census tracted, but census tract is not available Blank Census Tract 2000 not coded Coding Instructions 1. Code the Census tract of the patient s residence at the time of diagnosis. 2. Census tract codes should be assigned based on a computer match (geocoding software). 3. Census tracts are identified by four-digit numbers ranging from 0001 to 9989 and a two-digit suffix. 4. Assign code when an area does have an assigned census tract but the census tract is not available. 5. Right justify the first four digits and zero fill to the left. Add the suffix as the fifth and sixth digits if it exists; otherwise, use 00 so all six positions are coded. Example 1: Code census tract 516 and suffix 21 to Example 2: Census tract 409 and suffix does not exist should be coded Demographic Information 29